Annual Report of Tuberous Sclerosis Australia 2016/17

Annual Report
Together we can create a better life and more
hopeful future for every individual with TSC
1

Tuberous Sclerosis Complex (TSC)
TSC affects more than 2000 individuals in Australia and thousands more
carers, families and friends who live with the impact of the disease.
TSC tumours can grow in any organ of the body, commonly affecting
the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy,
developmental delay and autism. There is no known cure for TSC.
TSC is not just TSC
Epilepsy Autism Kidney
tumours
Lung
disease
... and
more
and then there`s the fear.
We have no crystal ball that can predict how any individual will be
affected by TSC. This fear can be crippling.
Financial
Education
& Work
All dimensions of wellbeing
can be affected by TSC
Emotional
Spiritual
Time
Physical
Social
Although the diagnosis of TSC is given to
an individual, it ripples through the family,
community and our whole society.
2

uberous Sclerosis
ustralia a (TSA)
TSA works to connect, inform and empower people affected by
tuberous sclerosis complex as we work towards a cure for TSC.
What We Do
• Ensure Australians with TSC
have access to the best possible
healthcare
• Provide up to date and accurate
information to all Australians
with TSC
• Support individuals and families
face the challenges of TSC alone
• Champion an active research
program in Australia that works
towards a cure for TSC
Our Values
• Diversity - we recognise everyone`s unique
experiences and contribution
• Excellence - our services and activities are of high
quality
• Equity - we aim to provide services that are accessible
by all people with TSC, wherever they live in Australia
• Openness - our decision making and
communications are clear and transparent
• Independence - we value our independence and are
accountable to TSA members
• Partnership - collaboration with other organisations
and individuals is critical to achieve our vision
Our Team
• Debbie Crosby President
• Patrick Norris Treasurer
• Alison McIvor Secretary
• Adish Chandra Committee Member
• Michael Jones Committee Member
• Michelle Purkiss Committee Member
• Georgina Schilg Committee Member
• Clare Stuart General Manager
• Kate Garrard Fundraising and
Communications Lead
Our Team of Medical Advisors
• Dr Sean Kennedy nephrologist at Sydney Children’s Hospital
• Dr John Lawson paediatric neurologist at Sydney Children’s Hospital
• Dr David Mowat clinical geneticist at Sydney Children’s Hospital
3

ship
eadership
eport
Debbie Crosby, President
and Clare Stuart, General Manager
It has been another amazing year at Tuberous
Sclerosis Australia and all made possible by our
part of running TSA is raising the funds needed to
achieve our goals. We are so grateful for each and
every person who chooses to donate to TSA, host a
fundraising event or support one of our TSC Heroes
in events around Australia.
This year saw a major milestone in our TSC Heroes
fundraising team. Formed in 2014 by the Place
family, the original TSC Heroes came together
again in November 2016 at the Western Sydney
a half ironman distance triathlon, joined by many
of his family and friends along with TSC dads Elliott
Cunnew and Anthony Crosby. This event raised over
$30,000 and took the total raised by TSC Heroes to
over $100,000.
These funds have allowed TSA to maintain and
improve our information and support services.
These include improving the availability of our
TSC Information Service, the only service of its
kind in Australia allowing people living with TSC
to call for accurate information, connect to health
professionals who know about TSC and someone to
listen who knows what life with TSC is like.
We’ve also been able to update our information
continues to be one of the hardest aspects of TSC
to live with. 90% of people with TSC experience
seizures and anti-epilepsy medication alone is often
not able to provide relief. Ongoing research into
medicinal cannabis, mTOR inhibitor medicines and
improvements in epilepsy surgical techniques have
with TSC. Our April 2017 issue of Reach Out brought
up to date information on these new treatment
hundreds of TSC families and health professionals.
This year we also received funding from Novartis
go to Dr John Lawson for generously giving his time
to do this session. It provided a great overview of
medicinal cannabis research and issues and allowed
participants to ask questions directly from an expert
in this area. The ability to participate in online events
and watch video recordings at a time convenient
to them means more people in more parts of our
big country can access accurate and up to date TSC
information.
We took time this year to refocus on how we can
need of Australians living with TSC. Our 2016 survey
emphasised that day to day life with TSC is full of
challenges including accessing TSC expert medical
care as well as mental health, education and disability
support. Despite major advancements in the medical
treatments available for TSC, there is so much more
we can do. We have refreshed our strategic plans to be
more ambitious and this annual report describes our
key priorities. The management committee is excited
about this next phase for TSA and the ways that we
can help to make the lives of people with TSC better
future.
Our organisation has grown and changed since it
was established in 1981. At TSA's core has always
been a dedicated group of volunteers. Thank you to
our management committee members, our regional
contacts and our dedicated fundraisers. We are also
so grateful to have the ongoing support of our TSC
Professionals Network who give their time to our
projects including presenting at education events,
reviewing our publications. This year we welcomed our
fundraising knowledge and experience to our team.
Having the resources to complete this work is the
largest challenge we have. We are passionate about
increasing the number of people and organisations
involved in our cause. If you can help us to talk to a
new group of potential supporters, we’d love to work
with you. Thank you again for supporting TSA this
year. We’re proud of what we have accomplished and
look forward to the future.
4

SA'S
chievements
A summary of the
achievements of
the Australian TSC
community since TSA`s
formation in 1981.
TSA founded
as Australasian
Tuberous
Sclerosis
Society
First issue
of TSA's
regular
magazine
Reach Out
published
First social
picnics held for
families with
TSC
First family
conference
weekend held
in Sydney with
attendees
from all around
Australia
National
Roadshow
brings up
to date TSC
information to
three Australian
cities
TSA is a founding
member of
Tuberous
Sclerosis Complex
International
TSC clinic
opens at Sydney
Children's
Hospital
bringing
together
specialists
disciplines
to provide a
whole patient
approach to
medical care
Produced You
Are Not Alone
the stories of
four Australian
families living
with TSC
TSA funds
genetics project
providing
genetic testing
for TSC and
improving our
understanding
of the genetic
basis of the
disease
2nd Australian
TSC clinic opens
in Brisbane
at The Mater
Children's
Hospital
First TSC two
day combined
meeting with
Sydney
Children's
Hospital
30th
Anniversary
Gala Ball held in
Sydney, raising
over $80,000
Australia site
in Exist 1,
international
clinical trial into
new medicines
for TSC
The inaugural
Elizabeth
Pinkerton
Memorial Award
is given to Dr
David Mowat,
to recognise
to improve
the lives of
families in
Australia
1981
1982 1986 1990 2006 2007 2011
2017
2016 2015
2014
2014
2013
2012
Launch of
TSA webinars
providing
updates on new
treatments and
discoveries
Four Australian
sites participate
in 1st
international
clinical trial
of medicinal
cannabis for
epilepsy in TSC
TSA conducts
second survey
TSC family
survey to gain
further insights
about how
family and how
TSA can best
support them
TSC Heroes
reach $100,000
in donations for
TSA
Development
of TSC
professionals
network
Published the
100th issue of
TSA's Reach Out
issue 1982
Combined
national
medical
and family
conference held
in Sydney
The TSC
Heroes team is
founded, uniting
fundraisers
around Australia
TSA provides
funding
to Sydney
University for the
health
economics
study, examining
out of pocket
health care costs
of families with a
child with TSC
Lady Cilento
Children's
Hospital in
Brisbane joins
major European
clinical trial
preventing
the onset of
seizures in
infants with TSC
and reducing
the rates of
developmental
disabilities.
TSA completes
the TSC Family
of its kind in
Australia and
New Zealand
First Perth TSC
Educational
Conference
Australian
Pharmaceutical
(PBS) funds
mTOR inhibitor
medicines, a
lifesaving new
treatment for
brain and kidney
tumours in
TSC. TSA led
the consumer
advocacy project
to help the
decision makers
understand
the impact this
medicine has on
the lives of those
TSC
Melbourne TSC
Information Day
Resource
directory project
is completed,
providing
detailed
information
about TSC
tailored to
Australia for the
TSA provides
over $200,000
in funding for
clinical trial of
a topical cream
to treat and
prevent TSC
skin tumours
at Sydney
Childrens
Hospital
5

The impact of your
support on our
information service
50
TSC families helped through our TSC Information
Service
15,000
43
Visitors to our website each year,
learning about TSC
397
Daily readers of our TSC
Information Pages
Members supported through
our online discussion group
Topics explored in our online discussion group
76
658
Posts in our online discussion group
People viewed our webinar on new
treatments for epilepsy in TSC
125
4,510
Views of our TSC education videos
2 7
Issues of Reach Out
published, exploring
epilepsy and digital health
Informal gatherings around
Australia for people with TSC
and their families
6

Gorgeous Greta
is 9 years old and has tuberous
sclerosis complex. TSA have provided life changing
information to Greta`s family that has helped Greta
to live her best possible life, despite their journey
Bridie, Greta’s mum was told that her unborn baby
would be “born with no quality of life at all and they
should start to think about palliative care”. The family
were beside themselves with shock and sadness. “This
doctor’s misinformation made that day the worst day of
my life. It was just horrible.”
TSA’s hope for the future is that no family should be
given this kind of incorrect information which causes
so much unnecessary fear and anxiety. Our focus on
providing information and support to families can be
transformative. Without the right information, Bridie
says she may have terminated the pregnancy.
Thankfully Greta’s family was introduced to a wonderful
volunteer from Tuberous Sclerosis Australia, Narelle.
“Getting the right information changed everything”
says mum Bridie. “Narelle’s daughter Lily is very similar
to Greta but a few years older. It’s been invaluable to
talk to Narelle during the bad times and to know that
they have been through similar things. It’s important
to me to know that there is someone there who I can
call. No matter how much your family and friends care
and love you, they don’t know what it is really like. The
connection with another parent who understands has
been amazing, and I will be forever grateful to TSA for
their volunteer program and providing us with the right
information about TSC.”
TSA’s focus on helping link families with TSC to expert
doctors and to other families who have experienced
similar things is invaluable. “Without TSA, we would not
have the support and information we need to get the
best care and treatment for our daughter Greta.”
Today Greta is exceeding all expectations and loves
singing, dancing and horse riding and is learning
more each day.
“Our family has been empowered to best manage
our daughter’s healthcare because of TSA’s online
right places and get involved with emerging clinical
trials. The TSA website has been a wonderful tool for
online information service we have provided it to our
GPs and other doctors so together we can go through
treating guidelines to make sure Greta is getting the
best treatment she can.”
7

The impact of your
support on improving
health care
Over the past year TSA has continued to work in partnership with government, medical
specialists, researchers, and our international counterparts to improve healthcare for all
individuals living with TSC.
Advisory Committee (PBAC), who make decisions on listing medicines on the pharmaceutical
inhibitor medicines since their PBS listing in 2013. Australian government funding of this medication
to treat TSC tumours in the brain and kidneys is improving lives.
“The PBAC thanked Tuberous Sclerosis Australia for the balanced and helpful advice provided in their
consumer comment. The PBAC noted that Tuberous Sclerosis Australia spoke of the value of the PBS
listing of Everolimus for people with TSC while also noting limitations in the use of this medicine.”
We continue to work with our valued TSC clinics around Australia. We partnered with Lady Cilento
Children’s Hospital in Brisbane to hold a specialised clinic for parents of younger babies with TSC. This
event provided them with a safe space to share
2
their challenges and fears and form connections
with each other. TSA now hosts an online group
for these parents to foster these connections.
Australian
projects presented
at International TSC
Research Conference
We also celebrated the launch of the Adolescent
and Young Adult clinic at the Bright Alliance,
part of Sydney Children’s Hospital.
We collaborated with the TSC clinic team and
the hospital pharmacy to have treatment for
the skin signs of TSC funded by the Queensland government. Combined with hospital funding in
Melbourne and Perth, many more Australians can access this cream at minimal cost.
Our TSC Professionals Network includes 40 medical
specialists around Australia with experience in TSC. This
allows people with TSC to seek out doctors with up to
date knowledge and experience. We will continue to
grow and strengthen this network in the future.
Four Australian TSC researchers attended the 2017
International TSC and LAM Research meeting in
Washington DC, USA. Their work reported on children
with TSC to better understand brain tumours in TSC
9
Australian sites in
international TSC
research collaborations
and the importance of early intervention. Australian research teams continue to collaborate with
international studies into early childhood development, epilepsy treatment options and the best ways
to manage skin tumours in TSC.
8

When Oscar was seven months old, he started
having seizures. Multiple tumours found in his tiny
heart soon led to a diagnosis of TSC. Oscar, now
15, lives with many of the signs and symptoms of
TSC. This includes tumours in his brain, kidneys,
skin, eyes and heart, and has been diagnosed with
autism and intellectual impairment.
Nearly two years ago Oscar’s scans showed multiple
large tumours in his kidneys. His team originally
thought that these may be cancerous.
“Things got out of hand by way of jumping into a scary
diagnosis too quickly. We have very good doctors here
but, unfortunately, not many have had experience with
It was only after a second opinion from TSC expert
doctors was sought that the cancer diagnosis was
ruled out and Oscar was able to avoid aggressive
treatment and kidney dialysis. Oscar started treatment
with a mTOR inhibitor medicine, Everolimus.
“The medicine has allowed Oscar to live a life without
the need of dialysis and has given him a better lease
on life. He goes to school and does all the normal
things. We know the tumours are stable in both his
kidney and brain, and his kidney function is stable, so
the medicine has bought us time. In addition, we’ve
seen improvements in Oscar’s communication and
thinking as well as his skin tumours.
Our family is very aware of how expensive this
medicine is and how fortunate we are to have this
medicine available to us in Australia. We are grateful
to the work done by Tuberous Sclerosis Australia to
ensure decision makers understood the importance
of funding this medicine on the PBS. Our expectation
is that this medicine will help Oscar to remain stable
until the next treatment is discovered.”
Oscar’s story illustrates the importance of health
professionals having up to date knowledge of TSC
and how the outcomes of TSC research are changing
lives and improving the health of people with TSC.
We`re proud of our achievements in having this
medicine funded under Australia`s PBS and will
continue to give TSC patients a voice by talking
directly to decision makers in our health system.
9

he future...
ure...
Advancements in
treatments and early
intervention bring hope
for the future.
TSA will persevere in our goals to improve the future for all Australians with TSC. We will
improve healthcare, champion research and enhance information available to positively
Our immediate focus for the future is to:
• Improve the distribution of information
> Create a new diagnosis resource: we will
ensure families have accurate answers and
days following a new diagnosis of a loved one
> Develop an education resource for
teachers: we will foster better understanding
and support for children with TSC during their
schooling years by improving information
> Generate an information pack for GP`s with a
patient with TSC: will give GP’s access to the world
standard healthcare guidelines that they require to ensure
their patient with TSC has the best possible treatment and follow
up care plans
• Improve healthcare for all Australians with TSC
> Expand access to treatments: Further improve access to
new treatments such as topical mTOR inhibitor treatment for
all Australians who need it
> Increase our professionals network: Expand membership of
our TSC Professionals Network so that all Australians with TSC can
see doctors with up to date TSC knowledge and experience.
“I found
that school staff just didn`t
understand the complex nature
of the condition. They focused on the
fact my son was autistic as they received
so much info on Autism Spectrum Disorders
these days but didn`t understand all the other
things that come with TSC that may affect
his ability to learn such as seizures, sleep
disorders, medication side effects not to
mention anxiety and depression.“
Kaarin from South Australia
whose son Conner
has TSC.
> Develop new multidisciplinary models of care: TSA will continue our work supporting the
development of best practice multi-disciplinary models of health care for people with TSC
10

Overcome barriers: Identify barriers to adoption
of the TSC Management guidelines in Australia
and ways these barriers can be overcome
• Champion research here in Australia
> Collaborate: Work together on
international research ensuring
Australian sites participate in clinical
trials for new treatments
> Strengthen relationships: Develop and
strengthen relationships with Australian
researchers and continue to grow our
Australian community of TSC researchers.
> Grow Australia's TSC research: We will
formulate a research plan for TSC in Australia
and collaborate with researchers and funding
bodies to expand Australia's TSC research.
“Attending TSA`s
Melbourne Information Day
made me feel very fortunate to have
access to the TSC clinic at the Sydney
Children`s Hospital in Randwick. We just
assumed everyone with TSC had access to this
level of care. I learnt this isn`t the case for most.
It must be so much harder for families to get the
help they need and see all the doctors without this
clinic. I really want to thank TSA for their hard work
advocating on behalf of TSC families to create this
clinic that brings together all the TSC experts in
one place. We get such good medical care for
our child because of this TSC clinic.“
Angela, mother of a 10 year
old boy with TSC.
“We`ve come such a long
way in understanding TSC.
We`ve changed lives through genetic
diagnosis, more accurate surveillance
and new treatments. But there is still
so much more to understand, especially
anxiety, challenging behaviours and other
neuropsychiatric aspects of TSC. We need to
momentum we already have.“
Patrick, grandfather to Liam
who has TSC.
We will rely on your
continued support and
generosity to ensure a better
and brighter future for all
“TSC is a complex
disease and it can be
quickly to a teacher. Teachers need to
understand that while every student with TSC
is different, they are at risk of having problems
with executive functioning, sustaining attention
a diagnosable intellectual disability. Helping teachers
to understand this as early as possible and to become
part of the TSC team for that student can make a
real difference. I look forward to working with TSA
on this project.“
Vanessa Sarkozy, Developmental
Paediatrician at Sydney Children’s
Hospital and part of the TSC
Clinic team.
11

hank kyou
Together, we have had a major impact on the TSC Community. Thanks to your generosity TSA
of pride for the work we have done supporting individuals living with TSC now and for the
future. This wouldn`t have been possible without your help.
TSC Heroes
Thank you to all the TSC Heroes who raised funds and
awareness for TSA by joining in these events.
Western Sydney Ironman 70.30
Heroes, was proud to bring the team back together for a half
ironman: 1.9km swim; 90km bike ride and 20km run. They raised
Anthony, are fathers of children with TSC.
City2Surf 2016 Belinda Allchin, who has two sisters with TSC, ran in
Sydney’s iconic City 2 Surf in August and raised $791.75.
Bridge to Brisbane 2016 TSA supporters, led by Isabella and
Miranda, took on the Bridge to Brisbane Day in August and raised $715.
#imovebeCAUSE Peta and Christy moved every day in May and
raised almost $200.
TSC Champions donate $6,014
Our regular givers, known as TSC Champions, make monthly
contributions to TSA. These are vital donations we can rely upon
each month to carry out our work.
TSC Members contribute $11,436
We are incredibly grateful to our Gold, Silver and Bronze members
who each year give so generously by renewing their membership
and making a valuable contribution in support of TSA.
Special Events
Our Suppliers
Pictured above: TSC Heroes in
the 2017 Bridge to Brisbane
We wish to thank all our
generous partners who
work with us to provide free
goods and services.
Belinda The Design Web
Anchor Web Hosting
NextPrint in Castle Hill, NSW
Magazines By Design
Orange Clothing
Company
Caz Nowaczyk for your
graphic design help over
the last three years
Lizzies Lunch 2017 Raised over $16,000. That’s
our biggest and best yet. Enormous thanks to Sue
and Ross Pinkerton for being the driving force in
running this successful fundraiser each year.
Thanks to the generosity of Diana Ferrari just
under $1,000 was raised at a fabulous shopping
night fundraiser held at the Diana Ferrari Castle
Hill store.
Bunnings AFL Party The team at the Bunnings
celebration to raise funds for TSA. We’re grateful
for the $2,269 they raised.
Daphna`s 40 for FOURTY Celebrated Daphna
$2,000 to TSA’s work.
In memory of Sienna Goong Over $1,800 was
donated to TSA to honour Sienna’s life. Sienna
will be forever in our thoughts.
12

Our Partners
TSA works closely with many organisations to ensure
individuals with TSC in Australia have access to
world-class treatment opportunities and information.
We are an active member of TSC International and
regularly collaborate with TSC NZ. We advocate for
people with TSC through our work with the Consumers
We are thankful for our collaborative partnerships with
these organisations.
Regional
Contacts
Our regional contacts work
with local families to share
information and experiences.
They help make sure everyone
with TSC has someone close by
they can turn to.
• Sally Nicholson New South Wales
• Dawn Bowra Australian Capital
Territory
• Nicole Stone Western Australia
• Fiona Hiatt Queensland
• Christy Herbert Queensland
• Fiona Crocker Queensland
• Narelle Kerr
• Alison McIvor
• Georgina Schilg Tasmania
Volunteers
To all our wonderful volunteers around Australia, what
would we do without you! Special mentions to Teresa
Llewellyn-Evans, Editor of Reach Out and Filipa Ottley, for
her assistance with risk management.
We couldn`t do what we do
Our TSC Families
without you.
by TSC who come along to our educational events, picnics and fundraisers and support our work by
sharing your experiences with us. You help inspire and motivate people to support us – thank you so
much! We are also incredibly thankful to all the families who share their stories and photos with us.
Your willingness to share your journey helps others know they are not alone in their experiences.
Our TSC Professionals Network
Thank you to all the medical specialists who worked with us to
improve and grow TSA’s information and support services this
year. We couldn’t do it without you!
This year we recognised the dedication of Dr Simon Harvey to
his TSC patients and their families by awarding him the 2017
Elizabeth Pinkerton Memorial Award. Dr Harvey is a paediatric
neurologist and epilepsy specialists at The Royal Children’s
Hospital in Melbourne and has an active research program into
surgical treatment options for children with TSC and epilepsy.
Donations
We would like to thank each and
every donor who has so kindly
supported TSA. Every dollar no
matter how big or small helps.
Pictured above:
13

ur Donors
TSC Champions
Belinda Allchin,
matched by
Macquarie Bank
Foundation
Aunt Ivy’s Laundry
and Dry Cleaning
Peter Clisdell
Andrew & Emily
Goldstiver
Hayley and David Hill
Sue Mason
Sally Nicholson &
Elliott Cunnew
Jennifer O'Donoghue
Catherine Panich
Robert Pinkerton
Melissa Rologas
Steve Walker &
Membership contributions to Tuberous Sclerosis Australia
Gold Membership
Leiel Bell
Dawn Bowra
Peter Clisdell
Debbie Crosby
Joanne Crosby
Rosemary Dow
Clare Dowd
Shirley Faravoni
Lachlan Foster
Gwynnydd Jones
Malcolm McLean
P Mercer
Rebecca Mitchell
David Mowat
Patrick Norris
Julie Osborne
Shirley Peipman
Steve Penniment
Sue Pinkerton
Michelle Purkiss
Scott & Georgie
Schilg
Marianne Somerville
Loren Wakeley
Robyn Walker
Catherine Wiles
Sue Williamson
Silver Membership
Dean & Elizabeth
Bartels
Lucy Di Falco
Peter Hennings
Fiona Hiatt
Alison McIvor
David Meredith
Emma Morris
Joelle Neville
Rebecca Salomons
Bronze Membership
Fiona Crocker
T Curtis
Chris Doyle
Christy Herbert
Gary Lee
Frank Martin
David Matheson
Lachlan McArthur
Faye McLean
May Mills
Beverley O'Reilly
Peta Peduzie
Noah's Ark Centre of
Shoalhaven
Graeme Shaughnessy
Claire Young
Donors
$1000 and over
Lloyd English
Michelle Stark
$500 and over
Frederick Alexander
Piret Braine
Lisa Chan
Robert Groneman
Lisa Liebman
Barbara Marneros
Julie Osborne
$100 and over
Community of
1 O’Connell Street
Luyun Bai
Heather Bolte
Maryanne Brooks
Stephen Brown
Sandra Capper
Sue Cumming
Janis Daley
Pam George
John Lee
Alan Malsher
Sue Mattinson
Alison McIvor
Orange Young
Professionals
Maria Pascalis
Chirag Patel
Lindsay Penson
Sue Pinkerton
Redback Conferencing
Martin Robinson
Gayle Rockstroh
Wendy Rose
Carolyn Sakoulas
Anastazia Sowter
Samantha Stone
John Wilson
Jay Yardi
In honour of
Alana Crosby
$500 and over
Aurelien Domont
Barbara Marneros
Christina Savvides
$100 and over
Debbie Crosby
Dina Floros
Maria Pascalis
Sasha Savvides Paps
In memory of
Sienna Goong
$500 and over
Lachlan Foster
$100 and over
Bayside Respite Care
Association Inc
14

In honour of
Oliver Lumby
$100 and over
Mary Dolan
In support of
Lizzie’s Lunch
$100 and over
Manjul Agarwal
Paul Cini
Allan Stuart
Brendan Stuart
Erin Stuart
Judith Trotman
In support of the
TSC Heroes at Western
Sydney Ironman
$500 and over
Tom Brennan
Tom Chidiac
Fleming Dynamics
Shervin Fathiniai
NOS Group
Linda Goldstiver
Felipe Henz
Grant Tokum
$100 and over
Carla Alzamora
A.C. Asphalting
Harald Atkinson
BPsych Clinic
Paul Baker
Jana Bogunovic
Jonathan Bayl
Camila Barp
David Bryson
Nick Bowden
Nada Buckley
Carlingford North
Pharmacy
Adam Carpenter
Alex Catteauu
Anthony Crosby
David Cowan
Tracey Cools
Elliott Cunnew
Jenny Cox
Michael Chevalier
Davis Ferrari
Constructions
Brendan Dwan
Shannon Doyle
Ilker Esener
Dina Floros
Paul Falkenstein
Robert Fowler
Andrew Goldstiver
The Gardenmakers
Luiz Goncalves
Prashant Gupta
Anthony Jamhour
Belinda Hamlin
Jennifer Hughes
Myrna Hitchcock
Neil Hardy
Liz Hewson
Monica Juhart
Bruno Jenel
Robert Johns
Enguang Lee
Philip Lee
Mark Lomax
Rob Landsberry
Giuliano Lot
James MacDonald
Jeanette Maynard
Joumana Manjah
Mark Metcalf
Roberta Meenahan
Sue Mason
Pete McLean
Phil Murray-Walker
Timothy Newing
Hit Cafe North
Narrabeen
Anderson Niomi
Logan Nerio
Jochen Nass
Mark O'Connor
Bruno Panno
Carolyn & Rod Place
Colin Pinkerton
David Porter
Murilo Pinamoura
Nick Pinkerton
Michael Pinkerton
Sue Pinkerton
Paul Piraner
Leigh Rust
Sherolin Santos
Elaine Shuter
Emmanouil Spanos
Erin Stuart
Michael Semple
Ara Sahagian
Pete Short
Greg Tiddy
Michael Tong
Denise Thomas
Sally Nicholson
Wendy Ward
Hamish Wakes-Miller
Alison Wakes-Miller
Joanne Wright
Josh Wander
Tracey Walker
Chris Wilson
Conditioning
George Yacoub
In support of the
TSC Heroes at Run
for a Reason in Perth
$100 and over
Hilary Francis
Revel Loughlin
In support of the
TSC Heroes at
City2Surf in Sydney
$100 and over
Belinda Allchin
Irene Christie
Natalie Coleman
Dance 4 Fun
Daniella Dimaris
Fiona Gleeson
Christina Lekovski
Jo Morrison
Miracles on Russell
Rob Ryan
The Pines Family
Practice
In support of the TSC
Heroes at Bridge to
Brisbane
$100 and over
Chris Bowers
Gary Bathgate
Cassie Eivers
Brian Sainsbury
We`d like to thank everyone who made a contribution to TSA this year. We are grateful for
each and every gift TSA received. We have chosen to list above only donations over $100,
because there were just too many of you to include each of you by name.
15

esults
Overview
healthy reserves.
This year we`ve invested heavily in development. The major increase in expenses in this category
is due to hiring our second staff member. We`re spending time, and therefore money, getting the
foundations right so that we can grow TSA to further our mission in the future. The revenue this
investment will generate will occur in future years. We will continue to look for ways to reduce
costs and keep our costs of fundraising as low as possible.
established an excellent working relationship with us and ensured that we are compliant in payroll,
provides secure multi user access for employees, bookkeepers, committee members and auditors.
Our investment policy is conservative. We invest solely in term deposits currently across Macquarie
Bank and Bank of Queensland. The maturity dates of our deposits are staggered through the year
so that we always have funds coming available to meet unforeseen needs.
The accounts for 2016/17 were audited by Mark Mortimer (Registered Auditor No. 1942). A copy of
his report is available at https://tsa.org.au/about-us/annual-reports/
The accounts of TSA align to the National Standard Chart of Accounts published by the Australian
Charities and Not-for-
Our work with pharmaceutical companies
Since 2011, TSA has collaborated with Novartis
and other pharmaceutical companies in a
number of ways. This year we did not receive
any new project funding from the medicines
industry. TSA interacted with the industry in
the following ways:
• We delivered our online education events
project. Novartis provided grant funding for
this project during 2015/16.
• Clare Stuart travelled to the TSC
International (TSCi) meetings and
International TSC Research Conferences
held in Lisbon, Portugal and Washington
DC, USA. TSCi travel funding is provided by
Novartis.
• As a part of TSCi activities, TSA received
project funding from Tuberous Sclerosis
Alliance (USA). Tuberous Sclerosis Alliance
receives funding from Novartis on behalf of
TSCi.
Our policy on working with pharmaceutical
companies describes how we maintain our
independence and integrity. This policy is
available on our website or can be provided on
request. We encourage you to contact us for
more information.
16

Financial statements
Balance Sheet as at 30 June 2017
ASSETS 30 June 2017 30 June 2016
Bank
General Cheque Account $27,612.48 $29,104.91
Savings Accounts $28,049.58 $66,986.06
Term Deposits $239,216.60 $182,675.35
Total Bank $294,878.66 $278,766.32
Current Assets
Accounts Receivable $0.00 $15,000.00
Sundry Debtors $3,160.36 $0.00
Total Current Assets $3,160.36 $15,000.00
Total Assets $298,039.02 $293,766.32
LIABILITIES
Current Liabilities
GST -$175.70 -$21.48
PAYG Withholding Payable $234.00 $0.00
Provision for Annual Leave $3,489.02 $0.00
Rounding $0.00 $0.25
Suspense $0.00 -$438.24
Trade Creditors $0.00 $335.23
Unpaid Expense Claims $1,615.63 $126.50
Total Current Liabilities $5,162.95 $2.26
Non-Current Liabilities
Sydney University Out of Pocket Expenses Study $0.00 $2,745.00
Total Non-Current Liabilities $0.00 $2,745.00
Total Liabilities $5,162.95 $2,747.26
Net Assets $292,876.07 $291,019.06
EQUITY
Current Year Earnings $1,857.01 $132.49
Retained Surplus $291,019.06 $290,886.57
Total Equity $292,876.07 $291,019.06
17

Financial statements
: Year Ended June 2017
30 June 2017 30 June 2016
INCOME
Donations Received $72,272.09 $50,034.10
Grants Received $5,376.00 $26,150.00
Sales of Goods $329.60 $709.50
Sitting Fees $791.98 $0.00
Event Income $24,269.71 $25,261.00
Membership Contributions $6,222.34 $7,260.38
Other income $11,117.02 $3,967.72
Total Income $120,378.74 $113,382.70
$120,378.74 $113,382.70
OPERATING EXPENSES
Advertising and Promotion $1,430.56 $3,002.38
Information Technology Expenses $2,718.68 $2,464.73
Insurance Expense $2,023.17 $2,576.16
Postage, Freight and Courier $2,456.40 $843.90
Printing & Stationery $5,260.98 $3,308.92
Publications and Information Resources $3,796.59 $3,713.37
Research Grants Awarded ($2,745.00) $0.00
Telephone, Fax and Internet $1,747.03 $1,025.24
$2,425.16 $1,119.36
Travel & Accommodation $6,953.44 $18,130.87
Accounting and Bank Fees $9,285.92 $4,651.05
Sundry Expenses $3,020.95 $1,374.20
Fundraising and Event Expenses $15,513.93 $30,818.40
Salaries and Wages $64,633.92 $40,221.63
Total Operating Expenses $118,521.73 $113,250.21
$1,857.01 $132.49
18

Where funds came from
Community
Fundraising
35%
Donations
24%
Grants
4%
Did you know?
During this year, TSA’s education and
support work was supported by a team
of volunteers. This includes Debbie
Crosby, who answers many of the TSC
Information Service calls as well as our
regional contacts around Australia. Their
statements.
$100,000
$80,000
$60,000
$40,000
$20,000
Investments
9%
$32,000
2012/13
Members
8%
Fundraising Revenue
$49,000
2013/14 2014/15 2015/16 2016/17
Revenue from fundraising activities including direct donations, membership contributions, fundraising
events and community fundraising activities
$90,210
How funds were used
Research and
Advocacy
8%
Events
20%
Accountability and
Administration
32% Information
and Support
23%
Development
37%
$77,254
$96,542
Descriptions of these
categories
Accountability and administration
The costs of running the organisation
to the TSA management committee. This
year we have invested additional time in
TSA’s future growth.
Research and Advocacy
Time spent working with policy
makers in health and disability to
improve the care available to people
with TSC. Expenses associated with
encouraging TSC research in Australia
and supporting recruitment into various
studies.
Development
The time to support community
fundraisers and organise TSA-run
fundraising events and campaigns.
This includes promotional and thank
you materials and fundraising team
uniforms. This year we have invested in
improvements to how we fundraise and
in future years.
Education and support
Costs associated with providing
TSC and to Health Professionals. This
includes all costs associated with our
education events, the TSC Information
Service, writing and updating our
TSC information pages, our resource
directory and publishing Reach Out.
19

There is still so much we need to do to improve the lives
Cover photo: Eryn, Matilda and Michael
Budgen from Victoria. Matilda lives with TSC.
Pictured above:
Tash run the 2017 City2Surf
Phone 1300 733 435
Website www.tsa.org.au
Email info@tsa.org.au
Facebook facebook.com/AuTSC
Mail 18 Central Rd, Beverly Hills NSW 2209 Australia
ABN 20 681 174 734
Deductible Gift Recipient Status: DGR1 and Public Benevolent Institution (PBI)
Registered Charity CC25313
CFN 13968